1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Do you have crimson crescents?

Discussion in 'Immunological' started by Robin, May 22, 2010.

?

Do you have crimson crescents?

  1. I have them and I tested positive for XMRV.

    5 vote(s)
    5.6%
  2. I don't have them and I tested positive for XMRV.

    2 vote(s)
    2.2%
  3. I have them and I tested negative for XMRV.

    4 vote(s)
    4.5%
  4. I don't have them and I tested negative for XMRV.

    0 vote(s)
    0.0%
  5. I have them and I have not yet been tested for XMRV.

    68 vote(s)
    76.4%
  6. I don't have them and I have not yet been tested for XMRV.

    10 vote(s)
    11.2%
  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
    I have just checked again, and after about 30 secs a matching thinner crescent appears on the other side, although it isn't there initially. :worried: So, am I abnormal or not.........................please, break it to me gently! :tear: :worried: :worried:
  2. awol

    awol *****

    Messages:
    417
    Likes:
    0
    I think you just might need an impartial observer to investigate your throat. ;)

    btw, someone earlier on in the thread mentioned that hers are quite asymmetrical so you are probably a marked woman.
  3. Nina

    Nina Senior Member

    Messages:
    220
    Likes:
    14
    Ok, I voted "no" but I just found one! Definitely only one. It was hard to find because that whole area looks so different from all your pictures. Since I've had my tonsils removed the colours and shapes in that area are not at all what they look like on the books. I never have a sore throat anymore though, do you guys have that most of the time?
  4. HopingSince88

    HopingSince88 Senior Member

    Messages:
    335
    Likes:
    5
    Maine
    I had constant sore throats until puberty, and rarely have had since then. I do have the crescents.
  5. Nina

    Nina Senior Member

    Messages:
    220
    Likes:
    14
    Same here. It stopped after I had the tonsillection. That was about 12 years before I came down with CFS.
  6. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    71
    PA, USA
    I have them. I've had them for years and years now. My doc won't do the XMRV test till it's available in the local hospitals here, but then I will get tested.
  7. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
    Thanks for that, awol :D

    I have had my tonsils removed, and I wonder if that makes the difference.

    Hi Nina, so you are lop sided, too! :D

    C.G.
  8. Robin

    Robin Guest

    Well, with the exception of Dr. Cunha, this is all anecdotal. There's really no research about it so we really don't know what is expected. Others have reported asymmetry. I would say that if you have a weird crescent in your mouth that's not supposed to be there, it's a "yes"!

    Sorry, unfortunately I don't think I can edit the poll. :( Oh well.

    I had my tonsils out too because of chronic strep when I was younger. My pic is the third one down on the thread!

    I have intermittent sore throats related to CFS but they're usually mild.
  9. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,392
    Likes:
    1,190
    I can't see mine, but my doctor said a couple of months ago that I have them. I hope to look into what they mean if you have them.
  10. maria

    maria

    Messages:
    9
    Likes:
    1
    Tennessee
    I have obsessively gagged myself with a fair amount of drool and loads of squinting and glasses shoving but I don't see any crimson crescents. I do have little red blisters all over the very very back of my throat where you have to push your tongue down and say ahhhh to see. I have these all the time. The first time i noticed them was last spring when i was fixing to have my tonsils yanked (and of course obsessively examining the soon to be evictees) and i assumed they would disappear with the icky tonsil cooties. They didn't disappear and every time i check they are there. So i don't know if they are related or not...maybe little red blisters are normal? I will continue to monitor said area and report any hint of crimson crescents.
  11. jackie

    jackie Senior Member

    Messages:
    591
    Likes:
    4
    AHHH maria! You lucky girl, you! Have you have much "viral" testing done by your doc? Like positive for any of the lovely Coxsackie Viruses? (as they can cause red blistery things)

    Tonsils yanked...interesting! are you actually as young as your avatar looks...or are you really an "adult with icky tonsil cooties who had to have them yanked"? which, after childhood is suspicious! I was 12..but developed Chicken Pox at 15!)...and did you/docs examine the evictees after they had become the departeds...to find any types of viruses? If not...it may be time to have some viral tests done....even though there aren't a lot of AV's SPECIFIC to these viruses (I wish, I wish!) - there are some that may help to off-set your total viral load.

    Since you appear to have an exaggerated gag reflex...no more shoving stuff down your throat...as to the Crim.Cresc.'s, from what I've read they can come and go as the "viruses" flare up/calm down. Give them time! (but make sure your doc knows about the blisters! also, mono can cause some and strep, and know knows what else...but those are more of a fine red rash, I believe.)

    Any probs with your tongue? (as in blisters/sores along the sides, or burning or a true "geographic tongue"? - as awful as that sounds) And if you DO have the CC's...I think they are a marker for me/cfs (as if you didn't already know that you have it!) - according to the Can. Cons. Doc. (they say "may have" with me/cfs)

    This is all part of our wonky immune system and MAY be realated to the herpes, enteroviruses, etc. that can proliferate. When I started on heavy duty AV's about 4 years ago...my viruses (and I.S.) went CRAZY!...I developed VZV full-time, and as if that wasn't enough I ended up with HSV-1 (to add to CMV, EBV, HHV-6) AND my cd4 counts dropped LOW, but at some point in my "treatment" they spiked up! (a little too high, am waiting for them to even out - which they probably would if I gave in and added some type of an Immune Modulator.)

    And although these viruses are a thorn in my side...they let me know what is happening to my immune system...and I HAVE experienced some improvements in other areas (such as my BRAIN!)


    jackie:D
  12. OurDayWillCome

    OurDayWillCome

    Messages:
    61
    Likes:
    0
    I have the crescents, very visible on both side. Tested negative by culture, and am waiting for other testing to become available.
  13. awol

    awol *****

    Messages:
    417
    Likes:
    0
    Hi all,

    IMPORTANT NOTE: According to Dr. Cunha who originally discovered these, crimson crescents can look very different and be located in a different place for people who have had their tonsils removed.
  14. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
  15. strawberry

    strawberry Guest

    Great thread!

    I have bright CCs that are always there. My throat is always crimson as well. I do not know my XMRV status. Nice diagram by the way, that is exactly where mine are (I have my tonsils).

    Thanks to Kim & Robin for posting some photos of them. They are the first ones I have ever seen on the Internet. Such photos are one of the best defences we have against people who say that ME is psychosomatic.
  16. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    yep i can just about see them VERY tiny little lines each side.
    also, my tonsils are very very small my gp once said they almost look like they have been removed!!
  17. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    If this doesn't give you nightmares, I don't what would.

    [​IMG]

    That should read -- I don't know what would.
    taniaaust1 likes this.
  18. lululowry

    lululowry Senior Member

    Messages:
    103
    Likes:
    0
    Athens, Georgia
    Great photo of some very noticeable crescents camas! :victory: As someone who struggled with lighting in an effort to take a picture of the inside of her mouth yesterday, my hat is way off to you.;)
  19. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    Thanks, lululowry. It was so scary that I debated posting it.:eek:
  20. maria

    maria

    Messages:
    9
    Likes:
    1
    Tennessee
    In response to Jackie...and no, Countrygirl, i'm thinking they ain't suppose to be there..
    I have not had any viral testing done by my doctor that i'm aware of...but i really would like to...and unfortunately I really am an adult...technically...(although does it really count when your still getting carded at 26 without fail???...and how is it I have to show ID to prove I'm 18 in order to buy a pocket knife but i can go over to the kitchen section and get a butcher knife with no problem?????).....with icky tonsil cooties who had to have them yanked...last spring. Now THAT was a long sentence.
    The doctor didn't say anything about any autopsy results..i just know they had big ole craters in them beforehand along with other pleasantries. Another random possibly significant but probably not important event of interest was the summer I took microbiology in college and we swabbed each others throats to grow augar cultures. There were 8? of us in the class and 7 cultures looked relatively similiar in nature as they were put in front of the professor. Number 8 made its debut and the professor made this "back away back away" face and covered his mouth as if the little jello thingy was going to sprout legs and make a beeline for his facial orifices. Would the lucky owner of number 8 please step forward :victory:
    I did try to tell the tonsil yanker doctor about the blisters but he couldn't be bothered...it might make him lose his race of being in and out of the examination room in under two minutes. BEEEP ohhh doc you lose now you have to buy lunch!
    In the tongue department.. i am constantly getting those annoying sore spots but i just assumed they were cold sores...doesn't everybody get them? But I am not yet able to use my tongue as a replacement for a gps device...maybe that just comes through experience...
    taniaaust1 likes this.

See more popular forum discussions.

Share This Page